Why Words Really Do Matter in Medicine
By Erica E. Remer, MD, CCDS
When I was seeking a residency spot, I stayed in Chicago at a friend’s house who also was pursuing emergency medicine. She interviewed the week before me at the same program. Part of the interview was a case simulation posed by the faculty member, of a patient who had a pulmonary embolism (PE) and needed to be admitted for treatment. My girlfriend asked if I had the same mock scenario where the patient signed out against medical advice.
My role play was of a woman with a PE, but I had asked her why she wanted to leave. She replied she had to pick her child up from school. I asked if there was someone else we could call together to pick her daughter up instead, because I was very worried about her and she could possibly die from the blood clot. Then she would never be able to pick her daughter up again. My patient had agreed to be admitted. I ended up in the residency program; my acquaintance did not. The words we used mattered.
I recently read an article in JAMA by Jacqueline Kruser, Justin Clapp, and Robert Arnold called Reconsidering the Language of Serious Illness. This article was based on the concept that when we, as clinicians, use the word “need,” we convey an imperative to patients and family members which may be contrary to what we think would be in the best interest of the patient. They used the example of a patient with advanced cancer in an intensive care unit whose daughter was told that her mother needed to be placed on a ventilator or she would die that day. The daughter felt that the physician was making the best call for her mother, and if her mother needed to be intubated and ventilated, that must be the right course of action.
The authors’ recommendation was to avoid the word, “need,” and to replace it with a description of the problem (Your mother’s breathing is getting worse). Then they suggested verbiage like, “Can we talk about what this means and what to do next?” It seems as though, “Can we talk about what this means?” would give the family permission to understand the implications, react, and work through their emotions. “What to do next” gives the space to offer extraordinary measures but also the ability to give permission to not act, to choose comfort care or palliation.
The takeaway is that when we have the urge to use the word, “need,” we should consider framing the discussion differently. Something important is happening, we need to think about what it means, and what all the options are. We need to provide the patient and their loved ones with the information they require to make the decision that is right for them.
I think this type of scenario is often encountered when a patient is in dire straits and nearing the end of life. It reminded me of the times in the emergency department when I did the atypical act of discussing end-of-life care and opting for hospice. Of the time I was at Walmart and some family member of a patient I didn’t recall ran up to me to thank me for having broached the subject and let her mother die a peaceful death instead of undergoing painful (ultimately) futile procedures. Sometimes it is just in the way we present it.
An article in the Journal of Medical Ethics (“Allow natural death” versus “do not resuscitate”: three words that can change a life) poses changing the expression from “do not resuscitate” to “allow natural death.” “Do not resuscitate” sounds like you are withholding something that a patient might want. It is an action in the negative – don’t do something. “Allow natural death” is a positive action, and it frames it in a positive light. They both refer to the same action, but one seems more desirable than the other.
It is also a function of the general population having unrealistic expectations. Most medical fiction portrays resuscitation as routinely successful and never describes how painful or futile the procedures can be. Ah, the word “futile.” This led me to a set of papers about the “painful decisions that must be made when a life is nearing its end,” focusing on the concept of medical futility or perhaps, inadvisability (What’s the Point? Clinical Reflections on Care that Seems Futile). The pivotal word here was “futile.” They pointed out that futile means the action inevitably wouldn’t work, whereas most of the time what we really are trying to convey is that an action is, in our opinion, medically inadvisable.
Who gets to make that decision? Who judges quality of life? Should survival be allowed to be the sole goal? Who gets to decide how small a chance is too small? Is a provider obligated to offer therapy which they believe will be futile? Can factors like predictable suffering or likely disability or financial hardship enter into the decision?
The last article I read was by Debra Mazza called “Your Son Is a Very Sick Boy: What One Says Matter.” It is a devastating depiction of the author’s experience of losing her 19-year-old son. She was a counselor at a hospice agency and understands doctor-speak but expressed how words chosen to convey the gravity of a medical situation can still be misinterpreted. “Sick,” “stable,” “recovery,” “wake up,” and “get better” may not mean the same thing to a family member as intended by the medical staff. Her message was that words need to be chosen carefully and are impactful.
My expertise is in documentation.
It is my belief that the words we use in documentation matter. It is why I would like to see providers put MENTATION in their documentation. I hope I have also demonstrated that the words we clinicians use directly impact the patient and family’s choices and the quality of medical care the patient receives.
Programming note: Listen to Dr. Erica Remer every Tuesday when she cohosts Talk Ten Tuesdays with Chuck Buck, 10 Eastern.